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Congenital Heart Disease (CHD)

Congenital heart disease (CHD) refers to a heart abnormality that a baby is born with. These conditions involve the structure of the heart and may affect how it functions.

With CHD, the developing heart doesn’t form the way it should. Sometimes the cause is genetic.

About 1 in 100 babies are born with a congenital heart condition. Lurie Children’s is equipped to care for any child with CHD. Our cardiologists and imaging specialists are experts at diagnosing and treating both the common and rare congenital heart conditions.

Types of Congenital Heart Disease

CHD can involve the walls or valves inside the heart. It can also affect the blood vessels that bring blood to the heart or carry it away.

There are many different congenital heart conditions. We often group them by the problems they cause for babies and children. The most common problems we see:

  • Not enough blood flow: The heart walls, valves or vessels haven’t developed correctly or are blocked. This makes it hard for blood to flow the way it should. Examples include coarctation of the aorta and hypoplastic left heart syndrome (HLHS).

  • Lung issues: The lungs are like a “moist sponge.” Usually, blood pumped to the lungs is separated from blood pumped to the body by walls, valves and vessels. Sometimes, one of these walls, valves or vessels has a hole. This causes more blood to flow to the lungs. The lungs may then become “very wet” and have an increased  blood pressure in them. Examples include septal defects, known as a “hole in the heart,” such as ASD and VSD, or a connection between blood vessels such as a patent ductus arteriosus (PDA).  
  • Oxygen issues: Blood with less oxygen is bluer than blood with more oxygen. Sometimes, abnormalities in the walls, valves or vessels results in not enough blood going to the lungs. This means that some of the blood will not get oxygen and the body will have more blue blood with less oxygen. Examples include tetralogy of Fallot, transposition of the great arteries, and tricuspid atresia.
  • Electrical issues: The heart also has an electrical system that causes the muscle to contract. Babies can be born with abnormalities of the electrical system. This can result in abnormal rhythms, or heart rates which may affect how the heart functions.
  • Muscle problems: Babies can be born with abnormalities in the heart muscle itself. It can be too weak or too thick and not function normally.

Whatever type of CHD your child has, Lurie Children’s can help. See our searchable A – Z list of congenital heart conditions.

How We Diagnose & Treat CHD

We diagnose most serious CHD during fetal life or soon after birth. For babies in the womb, we do this via fetal echocardiograms. Other times, we’re not able to diagnose the heart abnormality until later in infancy or childhood.

Children with CHD might have symptoms like irregular heartbeats, getting tired easily or shortness of breath.

When you come to Lurie Children’s, the first thing we do is take a detailed history of any complaints. We also take a family history, to learn how genetics might play a role.

We can often diagnose conditions with a history and a cardiac physical examination. If we need further testing, we start with the least invasive imaging to look at the heart. This includes tests such as an electrocardiogram, echocardiogram, cardiac MRI or cardiac CT scan.

We can both diagnose and treat certain heart defects using a procedure called cardiac catheterization. This involves placing a catheter, or a thin tube, into a blood vessel. Then we thread the tube into various vessels and chambers in the heart, sometimes across valves. Our team does about 1,000 of these procedures each year. We can fix certain types of congenital heart abnormalities using catheterization instead of surgery.

Some conditions do not require any treatment at all or can be managed with medication. More severe abnormalities may require one or more surgeries.

Why Choose Lurie Children’s for Congenital Heart Disease Care?

Congenital heart conditions vary greatly, but our expertise wraps around all of them. We treat CHD from birth through adulthood and are known for:

  • Leading heart care: As a top-ranked pediatric heart center by U.S. News & World Report, we treat all CHD, including the most complex conditions that require surgery.
  • High patient volume: Our pediatric heart surgeons perform 450+ surgeries every year and our cardiologists treat more than 17,000 children each year.
  • Ability to offer heart transplants: We are the only pediatric program in Illinois to have a heart transplant program. We average about 30 heart transplants a year.
  • Dedicated cardiac ICU: In our 44-bed Regenstein Cardiac Care Unit, cardiology attending physicians are available 24/7. This means the most senior expert is always there.
  • Access to latest devices: Through participation in clinical trials, we have access to the latest devices, such as heart valves. We are also an active cardiology research center.

Long-Term Effects of Congenital Heart Disease

The outcomes for children with CHD have steadily improved with the years. For some heart procedures, our outcomes have a 100 percent survival rate.

More adults are living with congenital conditions than ever before. This why adult congenital heart disease (ACHD) care is so important. Every year, we happily graduate adolescents into our ACHD program.

Children with heart abnormalities may have special needs which require extra support developmentally or physically. Sometimes they have an associated genetic abnormality or other physical impairments that add to this need.

For all these reasons, our team works with many other specialties to treat the whole child. Our NICU Cardiac Neurodevelopmental Program is specifically designed to help address some of the developmental needs.

Congenital heart disease is a journey. But it doesn’t have to define a child’s life. Every day, we see children who thrive and can look forward to a full life.

Heart Center Family Resource Guide

To help prepare families for their care with Lurie Children's Heart Center, we have compiled a list of resources about treatment and recovery. Learn how to get ready for an inpatient stay or outpatient visit, and read about our support services for patients and families.

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